FND dx, but now cannot see doctor

New diagnosis and before diagnosis
1

Morning all, hope everyone is as well as can be expected.

I was given a diagnosis of FND after an office exam, never had any other tests other than blood tests. I have looked over helpful sites etc but still really struggling.

My main concern is when I have any new symptom, I go to the DR or ring up to speak to one and get told it is the FND.

The heat has really made everything worse for me, I have had tightness/pressure feeling around the bottom ribs and for the last week have a numb cheek, around the cheek bone area on the right side alone with pain on that side of my head.

I do not feel able to go to the Drs about it because I feel that it will just be added to my FND symptoms and that nothing will be done.

Anyone else with FND feel like this?

2

Hi there,

Just before i had a really bad relapse, leading to a brain MRI and subsequent diagnosis of MS my neurologist thought i had FND, so i can empathasie with how frustrating it must be for you. Have they discussed any treatment with you, possibly physio or CBT?

Might be worth a frank converstaion, explaining how you feel you will not be listened too, then try and find a way forward from there. Good luck.

Laura

3

Hi Attic,

A FND diagnosis doesn’t mean you are imagining things or making them up, so you are as entitled to see the doctor as anybody else.

Even if it is the FND (not unlikely, since that is what you are diagnosed with), that doesn’t mean you should not be getting any help with it.

FND is as valid a Dx as MS, so that’s like me saying I couldn’t go to the doctor’s, because they’ll say it’s all MS. They’d very likely be right, but that doesn’t mean I shouldn’t go, or tell them what’s been happening (not that I do often - probably not as much as I should, but that’s beside the point).

We don’t really understand FND, at the moment, and it may not actually have a single cause, but really be lots of different diseases. But that doesn’t mean there is no treatment that helps at all. Some of the drugs, such a neuropathic painkillers, commonly prescribed for MS might also help with FND. Are you on any of those? Have you been offered the chance to try?

It’s a bit of a vicious circle, because if you won’t go to the doctor, because you don’t believe they’ll do anything, you’ll never find out if you were wrong.

If your current doctor seems a bit dismissive, and claims nothing can be done, is it possible you could see anyone else at the same practice? Because reasons for the symptoms are not yet understood, treatment might be a bit more trial-and-error than for other conditions, but I think some GPs would at least be willing to try, so if yours isn’t, perhaps it’s time for a second opinion?

I’m not promising there’s some miracle cure out there, that’s currently being withheld. It might be that you try a few things that don’t work anyway. But I think some GPs will be more proactive than others about letting you have a go.

Tina

4

Hi, I think you should ask for a second opinion. If you do not agree with your current diagnosis. I speak from experience I have documented attacks of neurological symptoms also some abnormal results etc. I was diagnosed with CFS/ME/FND it was added to my medical records. Everytime I saw a GP it’s down to FND I got that diagnosis removed from my medical records as with all neurological conditions they need evidence for a diagnosis I challenged my GP to provide me with.scientific evidence I have FND, neither the GP or neurologist could provide any. I suggest you ask for a second opinion also keep a diary noting symptoms, duration etc. I also encourage you to challenge the diagnosis of FND.

5

I think there is often an issue of timing here, and also an issue or choosing one’s battles carefully.

Often with a dx like FND or CFS, the dx will tend to stand unless and until new and compelling evidence comes to light. So a person risks banging his/her head against a brick wall when trying to challenge the dx until something happens that clearly makes the conviction unsafe (so to speak). Fruitlessly trying to make doctors change their minds can be soul-destroying work, as I am sure you will agree!

I think this is something to bear in mind for a person who is not happy that his/her dx tells the whole story, or that his/her symptoms do not fit with the dx. But any of us with a chronic condition knows that doctors suffer from confirmation bias as much as the next person - if you have an FND/CFS/MS or whatever dx, there will always be a temptation to put everything down to that… All very difficult. But we can take heart from the fact that any dx of anything is always subject to review - nothing is ever set in stone completely.

Alison

6

It’s not a battle is free and not very time consuming. Every patient has a right to have a diagnosis removed if they are not happy with it. GPs along with many other consultants are crooks and thieves, they destroyed the NHS blaming the government’s that have been in power as well as the current government. The government are not saint’s either they just cover the back of incompetent medical professionals by hiding the problems and mistakes that these so.called experts make unfortunately sometimes mistakes cost patients there life’s. The CCGs are the same shit but different toilet, the employees of the now defunct PCTs will be back working for the CCGs with up to three times more pay than they were receiving when they were working under the guise of PCTs. The CCGs were just created to cover the mistakes of the PCTs and incompetent medical professionals. Until somebody in your family suffers from neglect needing amputation, loss of using functions or maybe even death then you might wake up but it will be a.little too late. do not take this reply wrong Allison I don’t wish any of the above to anyone, but unfortunately just by saying sorry to a patient to placate them for.mistakes does not bode well with me. Question a medic they will get butthurt when you have evidence to challenge them they will just resort to guidance that suggests issuing an instant apology in writing also to the patient face to face as it always works. I’m not offended by your reply and hope that you.are.not.offended by mine. Apologies for.any typos as replying from a phone is not.easy.

7

[quote=“Anonymous”] It’s not a battle is free and not very time consuming. Every patient has a right to have a diagnosis removed if they are not happy with it. GPs along with many other consultants are crooks and thieves, they destroyed the NHS blaming the government’s that have been in power as well as the current government. The government are not saint’s either they just cover the back of incompetent medical professionals by hiding the problems and mistakes that these so.called experts make unfortunately sometimes mistakes cost patients there life’s. The CCGs are the same shit but different toilet, the employees of the now defunct PCTs will be back working for the CCGs with up to three times more pay than they were receiving when they were working under the guise of PCTs. The CCGs were just created to cover the mistakes of the PCTs and incompetent medical professionals. Until somebody in your family suffers from neglect needing amputation, loss of using functions or maybe even death then you might wake up but it will be a.little too late. do not take this reply wrong Allison I don’t wish any of the above to anyone, but unfortunately just by saying sorry to a patient to placate them for.mistakes does not bode well with me. Question a medic they will get butthurt when you have evidence to challenge them they will just resort to guidance that suggests issuing an instant apology in writing also to the patient face to face as it always works. I’m not offended by your reply and hope that you.are.not.offended by mine. Apologies for.any typos as replying from a phone is not.easy. [/quote] I am sorry that you have had such a difficult time. Alison

8

Thank you for your replies :slight_smile:

I am considering making an appointment about the face numbness because it really is bothering me. The tiredness, pins and needles, dizzy spells, muscle spasms, blurred vision, pain and weekness I guess I am use too.

I take Pregabalin, ametriptyline (bad spelling) and Prozac.

I probably would not feel as concerned if I had other tests to totally rule out anything else.

We do literally put our lives in the hands of doctors and I know of a few cases where mistakes were made and I don’t want to be one of them.

Angie

9

Thank you for your replies :slight_smile:

I am considering making an appointment about the face numbness because it really is bothering me. The tiredness, pins and needles, dizzy spells, muscle spasms, blurred vision, pain and weekness I guess I am use too.

I take Pregabalin, ametriptyline (bad spelling) and Prozac.

I probably would not feel as concerned if I had other tests to totally rule out anything else.

We do literally put our lives in the hands of doctors and I know of a few cases where mistakes were made and I don’t want to be one of them.

Angie

10

Hi Angie,

I think, unfortunately, numbness is one of the few things they won’t be able to treat - even if it was caused by (for the sake of argument) MS.

Numbness is caused by an absence of nerve signals - they’re just not getting through for some reason. Although there are some drugs that will calm down an unwanted nerve signal - e.g. pain - I don’t know of any that can replace a missing signal. Sorry.

It’s not the case that they won’t be able to fix it because it’s FND. I just don’t think they’ve found a way to fix it full stop.

It doesn’t mean you shouldn’t report it, but in terms of treatment, it’s not very likely to have a solution. You may have better luck asking for more help with the pain or pins and needles. Those might be managed better with a change of dose or a switch.

Tina

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